Surprise – It’s Me.

There have been  many surprises since I was last here. Some great and some horrible.

It is getting late here and sleep is calling.

I am excited to be able to share some more of our story with you.

It has taken me a long time to get back into the blog site as I forgot my log in details. I kept putting the need to rectify this on the bottom of my to do list as other things came up and demanded attention. As often happens.

I have written a few blog posts while offline so will share these over the coming days and weeks. I hope you are all well.

Love and Blessings

Kat xx

Feeling Useless and Hopeless

I am sure I am not alone in these feelings, whether you are a parent or care giver of neurotypical children or children on the autism spectrum or other additional needs.

As a follow on to an earlier post, I find myself still questioning how Sensory Processing Disorder works. Socks and shoes are still an ongoing issue and days at school are hit and miss for attendance. Soccer training and attendance and playing a Saturday game are also hit an miss.

Today, Mr 12 went to school in slippers. At school he went to change to socks and shoes to enter the hall for roll call. Thankfully, Learning Support had phoned and said we could go straight there. At this point, his socks were on his feet but it was hurting his big toe. I sat with him for approximately forty five minutes and helped him with his math booklet as he did not want me to leave. In the afternoon, a call from learning support had ensured me that his day had gone well. He had put socks and shoes on to attend a lesson and then kept them on for the rest of the day so he would be ready for soccer training tonight. Mr 12 did indeed attend soccer training and stayed and participated for the whole time. Today was a success and I have absolutely no idea how that happened!

Now let’s go back to the weekend where we did indeed manage to get to the game with plenty of time to get socks, shin pads and boots on. And here is where things went downhill at a fast pace. Firstly, the shin pads went on fine but that was where the good going stopped. The soccer socks were next and no matter how much pulling, adjusting, holding tight to get boots on, nothing was right. The socks didn’t feel right as they were no tight enough, they were too tight, they were too loose once in boots, they were too tight when I held the pulled tight sock to then get his foot in the boot. Boots were kicked off. I asked for permission from a club executive for him to play in joggers. I explained his autism and sensory processing disorder. The answer was, whatever it takes to get him playing. Unfortunately, that was not going to be enough to get Mr 12 to try and get shoes on his feet. By now, he was well and truly upset that his feet were not co-operating and he was frustrated. No matter what I tried, I failed. I was failing my boy miserably because I did not know how to help him. By now he wanted to go home. I tried a few more suggestions, but he curled up on the bench and covered his face. He was crying! I also wanted to cry. I have no idea how to help him. The visit to the podiatrist had not provided any workable solutions. We had to cancel our second visit to the occupational therapist as he was sick. We have another appointment for Occupational Therapy. We also have a consult with a Behaviour Therapist. But there and then, at the soccer field, I felt like a total failure as a mother as I have not been able to help my boy and there seems to be no answers nor an end in sight!

As I went to the team manger to return his team shirt, I turned around to go back to Mr 12, crying on the bench, to find him coming out to the team bench were the subs sit. He was welcomed by the manager and the coach. The coach gave him his watch and the job of timing the minutes for the subs to swap. Coach explained how the watch worked and Mr 12 was now involved with his team. He joined in team discussion and fruit and half time and then continued time keeping for second half. At the end of the game, coach told him to go shake the hands of the other team players as he is part of the team. I’m happy and relieved he is engaged with his team and heart broken that he is not playing a game he has loved. I am very thankful for a coach that is encouraging him and making the effort to keep him engaged.

I have no idea what tomorrow will bring. What will be the secret formula that will engage him to attend school? Will he be super sensitive tomorrow as he has spent so many hours in socks and shoes today? This is something I have not taken notice of before! As I write, this comes to mind, monitor the time he is in shoes.

I know I am a good mum. I know I am not perfect but I try my hardest to do what is best for my children and in particular for my boys, whom are still living at home, and will be for some time yet.

Puberty – What Is Happening?

shoesSensory Processing Disorder is something I am still learning about, six years after we begun the journey of our diagnosis of Autism. My youngest boy, now 12, has always had sensory issues with his feet. It begun with needing socks and shoes to be tight. It meant having to replace shoes up to eight times a year due to them having to be tied up tight so they felt right on his feet. The past three years have not been so demanding in terms of sensory feet difficulties.

It now seems that puberty is approaching and this means hormonal surges. No surprises there, I can hear many of you say. That is true! What I am totally unprepared for is the effect it is having on his sensory system. My boy has spent more days at home than at school recently as getting socks and shoes on his feet has resulted in two hour meltdowns. It has been distressing to see him so upset and hitting his feet, saying his feet are stupid and that his feet don’t want him to even have fun at soccer. Two hours at a time when the need to wear socks and shoes arises. As we are currently in a school term, the meltdown was happening day after day. I watched as he pulled his socks so tight they crunched his toes. I watched as he put his shoes on and then took them off and threw them across the room as his feet didn’t feel right. I tried to tie his shoes tight to help him. I purchased sensory socks, to no avail. I took him to the Occupational Therapist who suggested therapeutic brushing of his feet. Will follow up in two weeks. We went to the podiatrist to see if he had any wisdom or insight to share. He suggested trying barefoot runners as he needs the feel of bare feet to help him ground and center. He is seeking feedback from his feet hence the need for such a tight fit. I thought to myself “that makes sense”. We went shoe shopping, again to no avail. A controlled meltdown occurred in store and the fact the he was about to get his first pair of Nike brand shoes did not persuade him in anyway to conform to my requests or suggestions. He only wanted to go home as his feet were stupid! Next week we return to the Occupational Therapist to see what happens next.

The podiatrist has suggested a mini trampoline for bouncing and providing frequent feedback for his feet – brain connection. A meeting at his school has resulted in him either wearing slippers or joggers to class depending on how he is coping each day. Learning support are also providing him with lesson work in the learning support area when he cannot attend class. The school want to see him continue to engage in school and participate as he has transitioned so well to high school.

white socks

But how long will this last? When will his sensory system allow him to continue as before? When will he happily get both socks and shoes on his feet? When will the hormonal chaos of puberty settle enough to make his days at school happy again?

Mum, I Missed My Stop!

EndeavourThat dreaded message, “I missed my stop”.
I reply, “OK. Get off the next stop” then send a second message “Are you ok?”
The first reply comes as “OK” and the second reply comes as “OK”.
Fifteen minutes pass and I send another message “Where are you?” and there is no reply.
So, here’s the story……
I arrived at my son’s Occupational Therapy appointment early to surprise him and take him to get afternoon tea. He is 15 and for the second time he is catching the train after school to get to his therapy session.
Last week he left school, and successfully caught the train to his appointment. This train travel does include a change of train. When he got to the station he needed to alight at, he did so and then walked himself to the therapy centre. He did walk down a wrong street and when he realized, he was a little anxious but walked himself back to the main street and found the correct street.
This week, he successfully caught the train, did the train change but MISSED getting off at the correct station.
The above conversation takes place between him and myself and then nothing. I have assumed his phone has no gone flat as he should be back in a signal area by the time I message him to see where he is.
I message my daughter as her husband works for the Railway. I message my friend who is also has Asperkids and she panics. I message the therapist and inform him that my son has missed his stop. I tell him I am at the centre. I tell him that this mummy is panicky. He arrives in what seems forever and is calm and relaxed. I say that my boy is missing and he says that he will turn up. I walk into the therapy room waiting for some action but that doesn’t happen and we chat a little about learning life skills and problem solving. well, of course that makes total sense, except I have no idea where he is as his phone is flat. I am reassured that he will turn up. Not helpful I thought, so I say “I’m going to buy his afternoon tea” as I think that there is no point running all over the country side, beside where would I start.
My friend is now ringing train stations to see if there is a way to track him. There are mixed responses with one station being very rude and dismissive and the other very helpful. My daughter is reassuring me that it is good life skills.

But, we haven’t prepped for this kind of scenario. He has no scripted plan. Will he be emotional and crying? Will he know how to get back? Will he freeze? What if the station he gets off at in unmanned?

As I am leaving the grocery, I see my boy walking down the street. What a relief to see him. He is safe. I want to go run and hug him. But I don’t and he doesn’t see me. I watch him, with his fidget spinner in his hand and spinning, and walking to therapy. I enter the therapy centre only a minute after he does. I can’t tell if he is angry or upset but I see he is hot. I ask him how he is and hand him his lemonade and finger bun. His answer is a mumble but that is ok. Given what he has gone through any response I get I am very thankful for.

You may be asking why I didn’t hug him? The answer to that is that I m very aware of how much my feeling and actions can impact the way something is perceived. Although I was panicking about loosing my boy, I also was aware that he has caught the train before and that I think he has enough common sense to to figure things out. He knew where he had to be, right? Of course, I did not know how anxiety would play out in this scenario. Would he be able to think and reason or has he become non verbal in this incident and therefore be unable to ask for help or be unable to think and reason out this situation for himself. I didn’t not want to make a mountain out of a mole hill as the saying goes. I did not want to add to his fear or anxiety of the unexpected happening. Later, after his session and at home, I told him how proud I was of how he handled the situation. We talked about the anxiety and again, I told him how proud I was that he kept calm enough to work out what he needed to do to get back to where he needed to be.
Mummy lessons learnt here:
1. Plan for the unexpected in travel training. Teach strategies for different scenarios.
2. Buy a battery pack, especially for use on therapy day when the boy is travelling alone on public transport.
3. Take into account stations that are manned or unmanned on the train line.
4. Learn how to install and use a’ find my phone’ type of app so that if there is no response from the child that I may at least know where he is.
5. Lesson learnt from younger son, that mum’s phone number is on their opal cards.
6. Be thankful for an amazing therapist, who believes in Mr 15 and can use each and every therapy session to teach my boy, challenge my boy and believe in my boy and help this mummy not to panic too much!

What Is Good Enough?

I find myself torn at times, I want my kids to do the best that they can but not use their disability as an excuse to not try. I do believe that allowances need to be made in order that the children can work and study to the best of their ability. If by approaching the task from another angle facilitates and enhances their learning, then why should they be boxed in to perform a task like the rest of their peers?

For example, when a child is sent home to rewrite a task because it is not good enough, is this ok? When the child can carry out the practical task at school, follow directions, be safe and observe and understand what is happening in the experiment but write very simple sentences to explain  the process, why is that not good enough? I think if the child can verbalize what he is seeing and explain that to the teacher, then surely the learning outcomes have been achieved. The teacher would be wandering through the class to supervise and assist, so why not ask the child who struggles to transition from spoken word to written sentences a few questions to ensure the content of the lesson is understood?

This is an issue I am currently addressing. I do not want to make a teachers life more difficult than it already is.  My boys have been blessed to have the most wonderful and supportive teachers, whom predominately have a good understanding of ASD and my boys needs. In mainstream school, each new year will bring new subjects and new teachers who need to be educated and supported to support not only my boys but other children who require additional support at time. As I missed parent – teacher afternoon due to other commitments, I need to make the effort to book a meeting. Teach-Quotes-if-a-child-cant-learn-the-way-we-teach-maybe-we-should-teach-the-way-they-learn Daisy Heart

Having A Voice for the Voiceless

As parents, relatives and carers of children on the Autism Spectrum, we find ourselves having to be an advocate for our special people. I find that I also have to be an advocate for myself. Whilst I don’t have any disabilities, I do suffer from anxiety, depression and PTSD and being an advocate can be very distressing.

I left a marriage of psychological abuse in 2011 and also find myself drawn to be a voice for women who have experienced domestic violence of this nature. My heart has always been to love, support and care for the dis-advantaged, including numerous years as a foster carer. I also spent many, many years volunteering in the Welfare Arm of the churches I was involved in.

These days I don’t attend church and do have struggles with my faith. I have come to realize that the struggle is more to do with how people treat each other, not the infinite wisdom and power of God. I have been and am continuing in a Spiritual Journey of discovery about: What is Faith? Do I trust God? Do I trust People? Why Am I Here? What is My Purpose (beyond raising my kids)?

Recently I have had some experiences that have made me feel uncomfortable. I haven’t agreed with a group decision or a personal posting, finding it very judgmental and creating exclusiveness where I thought there was supposed to be openness and inclusion. I spoke up as I felt I needed my voice to b e heard, on behalf of others who may feel the same but not know how or be able to have a say. It was received with mixed responses, as expected, but still the need for exclusivity in this situation was dominant. I’m currently left with accepting the status quo in the exclusive group, leaving the exclusive group, staying but maybe not participating in the exclusive group. This exclusive group is a sub group of another group, the original group, and the original group is where I will stay.

I would love to hear from you, if you have experienced this or if you choose to reflect and answer the questions below.

  1. How do you manage family duties as an advocate?
  2. Do you feel heard when you advocate for yourself or others?
  3. Do you question your whole sense of being and purpose?

Till next time,

Love and Blessings, Kat xx

Don’t Get Too Comfortable – Note to Self

The year is certainly speeding by and it’s hard to believe we are almost halfway through term three. The year has been without incident for Mr 14, unlike year 7, last year. But Friday saw that reality come crashing down.
On Friday I received a text message from Mr 14 saying that he doesn’t want to be there (at school). I learn that he had been trapped in a room by some kids in his class. He was unable to just open the door and leave as it was an outward opening door that the kids were leaning on and preventing him opening. When he did open the door, he punched o ne boy in the chest and subsequently received three punches to the head.
I arrived at school shortly after the text correspondence with Mr 14. School was surprised I was there as no one had yet called me. I informed them that I had received a text from my son. Mr 14 was filling out an incident report when I arrived at school. Within twenty minutes of the first text, I was at school and my boy and I were on our way home.
It appears that this has been targeted bullying. I am so sad for my son as he wants to go to school without feeling harassed and bullied. I am heartbroken for him. I know I cannot provide him with the learning opportunities he is getting at school, in the areas that interest him. I often count the years until he can leave the school system.
I certainly feel inadequate every time I have to go to a meeting at school. No matter how much I prep myself for these meetings, I don’t feel I do an adequate job. I did fear becoming that kind of parent that the teachers get sick and tired of seeing. I do know, however, that my boys have to face the consequences of their actions, and I never back down from that. They also need to learn to be more adaptable and to block out the verbal stuff, but at the end of the day, violence is not the answer. Maybe some lessons in self defence and being able to protect one’s head might not go astray!
I am exhausted. I have lost my train of thought, so I guess this is it for today.
May your week be blessed, be positive and love abound!

Anxiety _ A New Lesson

Let me begin by telling you that the morning after the yelling match all was rather quiet and peaceful. Mr 11 was up and dresses even before my alarm went off. The morning went smoothly, the boys got ready and we left at the right time for me to get to my appointment.

Today I received a  pone call  from my doctor’s surgery.  They have my results and would like to make a non-urgent appointment with the GP for follow up. Come Monday morning I will be at yet another medical appointment. This time it is well after school has started, so there is no pressure to be out the door so early.

Today I have also made contact with a Behavioural Support Assistant. I sent her a cry for help in understanding Mr 11. She also confirms that oppositional behaviour is commonly an outward sign of anxiety! In attempting to make an appointment, I say I am pretty free and the first three options don’t work due to the boys community access schedule being on the same afternoon but different times and to other family stressors! Looking forward to finally finding a matching time for us to connect. Relieved that I have reached out for help and have full confidence that we have the right support person for this as she knows our family and has worked with us previously.

I have also booked myself for a consult with my naturopath for a new programme to get my health in shape and manage and support my body in healing and restoration with all the health issues I have.

Spent the morning at a School Leavers Expo for people with a disability. Although Mr 14 is in year 8, I am gathering info and understanding for the next few years as some things can start as early as Year 10.

Mid morning till the time for school pick up saw my time spent with my partner. We went and got ourselves a coffee, had a chat and ran a few errands.

After school we stayed home, except for me going to get hot chips for dinner. I wasn’t feeling all that great as I had consumes two “real” coffees today, one at the expo and one with my partner. My body gives me an automatic clean out when I have to much or too strong a “real” coffee. Way too much real coffee today with an awful side effect and left feeling unwell.

This evening I finally finished pinning the inner lining for a 4.5kg weighted blanket. I have overlocked the edges and tomorrow will also sew the edge hems and the coloumns for the plastic pellets.

A rather productive day. Tonight the boys watched a movie together and then settled quickly and well into bed tonight. They both had Melatonin tonight.

And my joy of the day was laughing at our cat. He is a Ragdoll Lynx and gorgeous. When he pooped on the bathroom floor (discovered later as I am getting ready for bed) he comes running from the direction of the bathroom/bedrooms. Running like a mad thing on a mission. He was so scatty and crazy. HE is funny to watch and often displays this behaviour after pooping. I think I need a cat expert to explain to me the behaviour of this cat!

It’s Days Like This I Hate

This morning I had to ensure we were all out the door early as I had a medical appointment for myself. Mr 11 was a little difficult as he detests being hurried. But we got out the door and all went well time wise.

This afternoon I was at Mr 11’s school for the usual afternoon routine. I drove around the kiss and drop zone twice, and found a park where he would see me. After five minutes I see him playing handball. Another five minutes go by and he waves at me. I gesture to him to come. After ten minutes he got in the car and said ‘Soz” meaning sorry. I told him not to bother saying sorry as he really wasn’t sorry that he kept me waiting for fiftenn minutes so he could play handball. The trip home was quiet, I had told him that I will not be taking him to soccer training tonight. I told him that his behaviour was rude and disrespectful. He hates it when I make him wait. I spoke to my partner and he had the same experience last week, when he had to pick Mr 11 up from school so I could attend a medical appointment. He was told then that he needs to be ready to go when school ends and not off playing. He wants us to be there on time but does not come when we are there.

Tonight, I yelled at Mr 11. Now I know that it is the wrong thing to do. So he hates me and I said I don’t care. He said he hates me again. I was unwell most of today and had a nap after school. Of course that put everything out for the rest of the evening as dinner was late, etc. I made the mistake of letting the TV be on tonight while we ate dinner, and they both got engrossed in a show. TV went off and I sent Mr 14 off to shower. When it was Mr 11’s turn, he first had to sit on the toilet for fifteen minutes. This is common and I have not learnt how to change that. Then he came out angry that he had to adjust the shower head again. The screw that hols the shower head in position and allows you to move it up and down was loose and not holding it the right place again. Always and issue for him. But as usual he comes out to get the screw driver and ranting and raving and blaming his older brother AGAIN that he has caused this problem. My partner and I have both explained that it is not his brother’s fault and how the mechanism works. But as he is usually showering after his brother die to his procrastination, then he assumes it is his brother’s fault.

So, I yelled and I got angry. I hate yelling and I feel like I am the worst parent on the planet. I think that I have to give him to his father and he can finish raising him. I am seriously so done with being treated like crap by him.

I try so hard and wonder why he is like this. I remember that I felt the same way with their oldest sister. I can be grateful that he is not physically violent like she was. I used to think the only way to manage her and giver her a better life would be to give her away to someone who “got her”. Well, I think the same way about him. Can I do this for another seven years until he is 18. Why is that the magic number? Really, there is no logical answer, his ASD won’t go away then. Will I have taught him enough for him to survive in the world? Will he have respect for friends? Will he be able to get and keep a job and be respectful at work? Will he expect everyone to run after him just like he does at home?

I don’t know! But right now, it’s time for him to have Melatonin and to close the story of this day and hope and pray that tomorrow is a better day. (I have another appointment in the  morning and we have to get out of the house early again)

History – How Did I Get Here?

The journey thus far has been so totally different and unexpected. The romance fairy-tale was not a reality and the perfect family upbringing was not so perfect from the inside looking out.

As a child, I always felt out of place. I was afraid and I didn’t really belong. My memory of childhood is very scare and scattered. I don’t remember being told that I was adopted. I was adopted at six weeks of age straight from the hospital. I was told at age four from the advice of the doctors. My parents were told this was the age to tell a child such news. I am guessing it must have been so scary for me that I cannot even remember. All I do remember is that I dreamed of growing up and having a family of my own to love and to cherish. I was going to have four or five kids and adopt or foster a special needs child. I was going to love and rescue all the children that were abandoned.

As a teenager, I collected articles about adoption and special needs and foster care. I dreamed of becoming a mum one day. I did consider becoming a nun and working as a missionary with children. Maybe that comes from an all girls catholic school education and some nuns as teachers. The missionary idea was a romantic escape from the demands of life.

After high school came university and the study to become a nurse. I was scared and intimidated. Genetics fascinated me and I wanted to explore other study options including teacher but that was prohibited. I did however, put in an application to the adoption agency for my medical history. The one thing I learnt from study to be so important for my future children and myself. I flippantly also filled out the paperwork for the adoption contact register. Never did I really expect anything as I was told by my parents I was an only child at birth as apparently that is what they were told. But it turns out I was child number six, and younger than me, I had a complex needs special needs brother in an institution and two half siblings.

After nursing I did my post graduate year at Ryde Hospital in Sydney then my midwifery studies also at Ryde. What an amazing year that was and being surrounded by all these precious babies was so special. After that year I moved to Dubbo and met my now, ex-husband. It was a whirlwind romance. I was totally oblivious to the so many things and so happy that somebody loved me despite my flaws and hidden secret that I had shared with him. At one point my instinct was to leave, during our engagement, but the words of you made you r bed so you lie in kept resonating. I told myself I had made a commitment and must keep it.

We met in 1992 and married in 1993. Daughter one was born in 1994, his first heart attack was 1995. Daughter two was born 1996 and his second heart attack was 1997. Then there was a third one in 1999, after spinal myelitis where we thought he has MS as he was loosing feeling in his lower limbs and his walking was impaired. The steroids caused that third heart attack. In 2000 he had testicular cancer and he had to have one testicle removed and radiotherapy. We were told we would never conceive naturally. In 2001 and our first son was born much to this dismay of the oncologist who was cranky we got pregnant so soon after radiotherapy. 2005 saw the birth of our second son and fourth child. At the four caesarean I had a tubal ligation as my body would probably not support another pregnancy. 2006 saw my husband have five way bypass surgery. 2007, we moved from country NSW to Sydney to attend bible study for my husband to become a pastor.

In  2010 we separated as I could not live a lie.  In 2011 I moved to regional NSW to start a new life with me and the boys. Son one was diagnosed in 2011. Son two was diagnosed in 2013 on paper but 2012 verbally. 2012 also saw the diagnosis of my now ex-husband and my first born daughter at age 17.5.  What a year. My very first conversation with the diagnosing psychologist was like she had been a fly on the wall of my house for those eighteen years or so. What a relief it was to me to find out that I was not insane. There was a reason for what was happening.

In 2015 I was given the opportunity to participate in contributing to Parenting a Child on the Spectrum. I am honoured and humbles to be published beside these amazing ladies. Some have made some incredible contributions to the autism community and I am in awe of them. For me, writing was so very cathartic, so freeing and so validating. Autism isn’t the only part of my life that I want to share openly and honestly about, but Autism is what has got me to this place today. I am thankful for the opportunities and  lessons it has brought on this journey. And at times I am angry, resentful and wonder how there can be a God and how can this life be just and fair. Mostly, I am thankful that I have been able to support and encourage others and that is what I want to continue to do.

May you be blessed and loved by my honesty and openness.